15 December 2011

Last night I went out to dinner with the religious education committee that I joined this fall. This is the first time that I have socialized with the members of a committee that I work with. I had the vague idea to do such a think when I was PTO president but my circumstances with David were such that it was impossible. Last night, I went to dinner at a restaurant where I celebrated my birthday with David and Mary and Robert a few years ago -- was a a life time ago? Was it two birthdays ago? -- and had a lovely time. It was dinner with six women, one of whom has a four month old baby at home. We had a glass of wine -- not the new mom -- and talked about nursing, birthing, schools, kids who don’t eat, sleeping and the lack of doing so. Yes, parent talk. Probably what women have always talked about. It was unselfconscious. It reminded me strongly of other times. Times discovering how lovely talking to women could be. It is not that I don’t do that now, but I don’t do it enough over a glass of wine and dinner. I do it on the fly if and when I do it at all.

It was not easy getting out to go to dinner. Julia had OT and speech therapy appointments after school -- the amazing stuff we did there will be discussed next! -- and there was Madison traffic coming home -- something I rarely see as i almost never travel during out brief beginning and end of work day travel surge -- and then there was a quick bath, bandaging and bandaiding and then dinner to prepare before the sitter came. Of course, the sitter had to be one of Julia’s therapists who has no trouble with the long list of Julia’s operating procedures -- to say that I am splendidly blessed by the young women who guide Julia through therapy each and every day is so much less than the experience of having them in our lives. All was done and ready by the time Bethany made it to our house and I was out the door so meet my supper companions by 6:20.

And Julia ate her supper, play with Bethany, and got through the remainder of the evening ritual before bedtime and was asleep before I made it back in the house by 8:30.

And it was delightful. It is not that David fulfilled all of my needs for friends and acquaintances. He was not everything to me all the time, but he did provide a solid partner. With his companionship, I could still miss a good talk with my girlfriends, or a good talk about some topic that did not interest him at all. But I could, when necessary, survive on little else but his companionship and be satisfied. Without him, my loneliness is my constant, broken at times with conversations that splash into the bottom pit that is my neediness. Marcia’s check in phone calls, Lisa’s texts, Amy’s walks, tea with Mary, a short conversation with a therapist, the morning’s walk around the block with the dog and parents who see their kids off on our school bus, email from my Findhorn friends, a visit with Cheshire, even a friendly interchange at a shop -- this is what feeds me but it is a starvation diet. Not that I am not grateful for each and every interchange. They are keeping me alive. They connect me with what is outside of me and feed my optimism that I will either learn to be satisfied with this level of companionship or that I am still capable of companionship on some level and will someday have all that i crave. I don’t want the level of companionship that I live with now to be what I have for the rest of my life and I will do what I can to have what I want. But in the changing what can be changed and accepting what can’t, I see that this may fall into the later category.

And I wonder if I have had all the joy that has been allotted to this life for me. This is not a poor me, self indulgent with heaps of self pity statement, just a wondering. Some people have much less joy that I have experienced and there are still so many things that make me happy and willing to pick up my tasks for another day.

I have been wondering about apps. Iphone, ipad apps. Not too long ago, I read an article about apps for autistic kids and followed some links to a confusing array of possibilities. It was overwhelming and I was sure it was not going to be an easy jungle to make my way through. I put the idea aside but definitely sent the request to the universe for some help. And it arrived today. The help, that is, in the form of Julia’s speech therapist who showed us a conversation app that she is beginning to use in therapy. I have been on the fence about buying an iphone, which I want but have not been able to fully justify. I’ve never spent money on a new phone. I have always picked one of the “free” phones offered by whatever carrier I have used. But I have had a hankering, a wanting a new toy wanting, for an iphone. After watching Julia interact with this conversation app, I am ready to buy an iphone tomorrow!

The program shows a picture, of a child holding a snail, for example. And asks the player to choose among three things that might be appropriate to begin a conversation with this child. One choice is a statement similar to what Julia would usually say. In this snail conversation, the statement was “Your hands are dirty.” A choice that would not encourage interchange but that is generally on topic. There are also two questions and the “right” answer, in this case was “What are you holding?” Clearly, none of the three possibilities are wrong, per se, but there is always one that is best for starting or continuing conversation. Most of us gravitate to the best conversation starter, missing now and again, but managing to make out way through conversations all the time. It is how we survive as social animals and we do it naturally. How incredible this is! But a kid like Julia, kids on the autism spectrum, don’t get it. They don’t naturally learn conversation. They blurt out observations or facts that are interesting to them, trying and failing to interest other people. It is miserable as a parent to watch these misshapened attempts at connections. And so, Julia listens to social stories, she and her therapist and I work on scripts, but conversations rarely follow scripts. It is so much improvisation and kids with autism are so woefully bad at improvisation.

This program that she used yesterday gives the three possible things to say, provides reasons for why one is the best, allows the child to record the best statement, and after a few interchanges, provides an entire conversation that can be played back. A complete and appropriate conversation that the child has helped to put together. In the child’s own voice. And I teared up to hear two simple and appropriate interchanges with Julia’s voice as one of the speakers. And she was fascinated. I believe that she can learn how to have a conversation which is a step to learning how to have a friend. But I also know that we have not yet found the tools that she can use for the learning. Maybe now we have. Yes, it is still all about improvisation, and she is still not good at that, but I see her generalizing all the time in her reading now. If she can generalize with reading, there is a decent chance that she can do it to learn to make friend as well. And she does so want friends.


Snickerdoodle said...

Unless you really want a new phone, why not get
An iPad? I believe the iPad3's are coming out
in February! A much bigger screen!!!

Suz said...

Truth is that I need a new phone. Mine, which is a blackberry and only 18 months old, is almost useless. Battery life requires recharging a few times a day. So, a new phone is in the near future. I have a hankering for an iphone, but as I've written before, I've never bought a cell phone before. I guess I really don't have to do it now. I could get a "free" phone and buy an ipad. But I am concerned that the ipad are so breakable and so expensive. But I can't seem to just go out and buy that iphone. I'm not sure what I am waiting for.

Traci said...

Please go buy that phone! It will serve both of you VERY well!! Maybe the iPad is in your future too, but go for the iPhone, and if you are dragging your feet then reread your post. Heck, I want to go buy you an iPhone!!

Love and miss you! We would love to have the two of your for a visit if you are hungry to visit someone. Sorry, we're not China or Italy, but we sure do miss our sister and our friend.

We also have news to share that can't be shared publicly yet. Maybe I'll call you now as I leave to pick up from school. :)

Love, Traci